We had a friend who gave us information to see a new neurologist who ended up being Zoeys original doctor at primary's! We met with him this week and finally got a little more detail about what is going on with Zoey and where she is at. I'm happy to report that everything we have tried up to this point is exactly what we should have been doing. However, he was able to explain things to me that were a little more user friendly to understand. I showed him videos of my Zoeys seizures and he new exactly what kind they were. First time I have had a name to her seizures. Myoclonic. Then he was able to tell me right away that of course Zoeys doesn't have Rett syndrome, wish we could have that information before we spent so much money on genetics and travel, but nice to have yet another person validate she doesn't have it.
The bad news we received was that Zoeys types of difficult seizures, being myoclonic and having been diagnosed with LGS, we were at a 3-5% chance of gaining total control of her seizures. Not what we wanted to hear. I wanted them to stop and see if we could get her to learn and grow without seizures interrupting things. We also had only a 20-30% of gaining some control with meds. So not great news, but we really don't have much choice so on we go. I was also able to understand more about the scary rash medicine that I have been putting off for months. Turns out once explained, yes it can be a problem, but not nearly as bad as what I was originally thinking. Back on meds my Zoey goes. Not too happy to have her back on the pharmaceuticals, but charlottes web (CBd oil) just isn't cutting it. It has helped in so many ways, helping her focus, being happy and playful, and finally learning things again, but not helping the seizures. Our plan is to continue doing CW until the new med is in full effect ,somewhere around July, then take her off. We will see if there is any difference in behavior and personality, if no we will be done with it. If however, we do think it helped we will switch to Hayley's hope. Another form of CBD oil. If we have luck with this medicine then yay! If not, we will hopefully have more leverage to get my insurance to cover some of these other meds. For now I am feeling like we are back into action. It's been an awful few months watching her scream in pain 3-4 times a day suffering with her seizures and if I can give her even a few days break from them I will take it! Keep Zoey in your thoughts and prayers, and we will keep fighting for our baby girl ;)
